Archives by Day: January 8, 2018
Siblings, Rachel and Matthew are your typical teenagers. They have hobbies, passions, and bright visions for the future. Rachel is a sophomore at The Ohio State University Marion studying Early Childhood Education. Matthew is a senior at Delaware Christian and loves playing video games and watching the Cincinnati Reds.
Both Rachel and Matthew were born with Epidermolysis Bullosa otherwise known as EB. EB is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the U.S. The unofficial “mascot” for EB is the butterfly because people with EB have skin that is as delicate as a butterfly’s wings. The skin of people with EB blisters and tears very easily.
Because of the nature of their skin, bathing can be a very painful process. However, over the summer, Rachel and Matthew received a new bathtub that changed their bathing experience entirely. According to Jason Hydrotherapy, the MicroSilk Hydrotherapy tub oxygenates bath water up to 70% more than regular tap water. The “microbubbles enter the skin’s pores, removing impurities, carrying oxygen for improved metabolism, lightly caressing skin for exfoliation, and improving hydration for dry skin.” Both Rachel and Matthew complete two 20-minute cycles in the tub every other day. It is a four hour process from the removal of their bandages, to the tub, to the reapplication of the bandages. While unfortunately the tub does not shorten this process any, it does make it much less painful and more importantly, it cleans the wounds more effectively. By using the hydrotherapy approach, there is less need for pool salts, bleach, vinegar, and other cleaning products commonly used to clean the skin of people with EB.
“This tub makes it easier to know they’re getting clean and are in less pain. It’s a much more relaxing process than it was before we got this tub,” explained Molly, Rachel and Matthew’s mom.
There are only four comprehensive interdisciplinary EB centers in the United States. Rachel and Matthew visit the EB center located within the Cincinnati Children’s hospital. Since they visit Cincinnati so regularly, Molly always tries to plan something fun to do while they are there. They have become big fans of the Cincinnati Reds and in fact, Matthew attended spring training in Arizona in 2011 as a part of his Make-A-Wish and received Joey Votto’s bat.
A sophomore in college, Rachel is getting ready to start her student teaching. She enjoys working with younger children and appreciates their candidness when it comes to her skin condition. When asked what she wishes people knew about EB, Rachel said, “I wish they knew it wasn’t contagious and that they’d be brave enough to ask about it.” As a part of Rachel’s Make-A-Wish, she had the joy of meeting the cast of NCIS. “It was awesome,” she exclaimed! If she could do Make-A-Wish again, she said she’d like to go to Hawaii or meet the original casts of Once Upon-A-Time and Hawaii Five-0.
As a family, they have attended many of the EB conferences that occur every two years bringing people, doctors, and researchers from all over the world. Molly said the most valuable part of the conference is talking to other families. There are only three families in Ohio that Molly is aware of who have children with EB. Facebook has become an incredibly useful tool for questions about new products and medications, as well as tips and advice. In fact, it was a family Molly connected with through the EB Facebook group who informed her about the MicroSilk tub.
Rachel and Matthew are simply remarkable young adults. Not because they have an extremely rare diagnosis but because in spite of their diagnosis, they push forward to lead the same lives as their peers, participate in clinical trials to promote the research of EB, and strive to achieve their dreams. The determination and openness that both Rachel and Matthew share, is what allows them to lead personally fulfilling lives and achieve their full potential.